QUENCH-PD: PD and changes in eating & drinking behaviours version 1
Research type
Research Study
Full title
QUENCH-PD: Qualitative Exploration of Drinking, Dietary and Lifestyle Changes in those living with Parkinson’s
IRAS ID
358130
Contact name
Carrie Stewart
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
0 years, 10 months, 31 days
Research summary
Research Summary
Parkinson’s disease (PD)is a common brain disease in older people. The main symptoms are tremor, stiffness, and slowness. Other important symptoms, such as loss of smell and constipation, are known to occur before the diagnosis. We call these early symptoms. They may be associated with changes in a person’s eating and drinking habits. Changes in eating and drinking habits may cause other symptoms. For example, drinking less can cause low blood pressure, leading to dizziness and falls. Falls and low blood pressure are common for people living with PD.
Our group’s research has identified that people with newly diagnosed PD drink a lot less water than people without the condition. However, we do not know the reasons why they drink less water.
We want to find out more about the food and fluid intake in persons living with PD to allow us to identify if food and fluid intake changes during the course of PD.
To answer this, we will interview 10-12 persons living with PD and 10-12 family members/ care givers (if appropriate). We will ask them about their experiences of eating and drinking habits and any changes in these which they may have noticed and may be related to PD.What we learn from this study will allow us to support people living with PD to live as well as possible with the condition. It will inform the design of our planned future study for an intervention which can improve drinking habits of those living with PD.
Summary of Results
What was this study about?
Parkinson’s disease is a long-term condition that affects movement, balance and many other aspects of daily life. Our previous research suggested to us that Parkinson’s may change the way that people eat and drink. However, this side of the disease is rarely researched. There is very little understanding of what changes may be occurring, when they happen and the impact of these changes upon the person living with Parkinson’s and their care partners.
We wanted to understand exactly how Parkinson’s disease affects eating and drinking, and what that means for the everyday lives of people with the condition and those who care for them. We also wanted to hear about any experiences of getting (or not getting) advice and support around food and nutrition.
Who took part?
We spoke with 20 people: 12 people living with Parkinson’s disease and 8 of their care partners. Participants were aged between 54 and 81 years of age. Of those living with Parkinson’s disease, time since diagnosis ranged from one to 14 years, around one third of had some degree of difficulties using cutlery and almost half of had experienced some degree of difficulties with swallowing and choking. All conversations took place as in-depth interviews, giving people the space to share their experiences in their own words.
What did we find?
Six key themes came out of our conversations. Together, they show a picture of how Parkinson’s disease shapes the experience of eating and drinking. It is important to remember that changes were rarely linear. Experiences of changes in eating and drinking were often cyclical, improving with changes in treatments. It is also important to remember that it was rare for all the changes described below to happen to one person.
1. Medication rules the mealtime
For many people, the timing of their Parkinson’s medication has a big impact on when and what they eat. Some medications work less well if taken around the same time as protein-rich foods like meat, eggs or dairy. This means meals and snacks have to be carefully timed and planned, every single day.
This takes real mental effort. People told us about having to think ahead for every outing, social event, and meal away from home. One person described planning days in advance before a wedding to make sure their medication would still work properly on the day.Several people said that retirement had made things easier, giving them more flexibility to build their day around their medication. A few also said that once their medication was well-managed, their eating actually improved as they had more control over their movement and could prepare and enjoy food more easily. However, side effects from medications had caused eating and drinking difficulties for some, but these had resolved by the time of the interview.
Our finds show that while juggling medication and mealtimes was a challenge and a job, it was important for their ability to eat and live well.
2. Physical and sensory changes
Parkinson’s affects the body in many ways, and several of these directly interfere with eating. Changes in taste and smell were common. Some people found that food tasted bland, while others experienced strange or unpleasant smells and tastes that put them off certain foods altogether.
Managing the physical side of cooking and eating had become harder for many. Tremors, reduced grip and balance problems made chopping, stirring and carrying things like hot heavy pans more difficult and sometimes risky. Over time, many people’s partners took over most of the cooking. This was not always by choice, but out of necessity. Similarly, performing eating and drinking could be problematic. Tremors made co-ordinating food from plate to mouth, or liquids from cup to mouth, challenging. This could result in spills and often led people to make different food choices, especially if eating away from home or in the company of others. For some, swallowing difficulties and choking could be an issue. To reduce choking risk, they had learned to avoid certain food types, to cut foods into small er pieces, to remove skin from fruit, and to eat slower.
That said, not everyone experienced significant change. Some people, particularly those whose symptoms were well-controlled by medication, found their eating habits had changed very little. Some had even started eating more healthily since their diagnosis, motivated by a belief that good nutrition could help them manage their condition. At times, eating healthier in terms of increasing fibre, eating more fruit and vegetables and drinking more water was motivated by a want to improve constipation. Some participants reported stopping or reducing alcohol, also motivated by healthier living. But for some, concerns that alcohol may increase their risk of falls lay behind their reason for reducing alcohol intake. However, managing other symptoms and conditions did not always lead to improved eating and drinking. Several participants reported how their difficulties with urinary incontinence led to them restricting fluid intake.Managing the direct and indirect symptoms of Parkinson’s disease resulted in significant changes in eating and drinking behaviours.
3. Appetite, hunger and thirst feel different
Many people described a change in their internal sense of hunger and thirst. Many said they were now eating out of habit rather than because they felt hungry. Meals felt less appealing, portion sizes got smaller, and some people were missing meals altogether. For some, this had resulted in significant weight loss. One challenge that resulted from reduced appetite was the difficulties to plan meals and the grocery shopping to prepare those meals. Low interest in food led to little motivation to decide what you wanted to eat.
Nocturnal eating, getting up in the night to eat, often eating sweet snacks, was common. Some also reported an increased craving for sweet foods during the day too.
Thirst was also affected. Several people said they had never been particularly thirsty, even before their Parkinson’s diagnosis. Parkinson’s seemed to make this worse. However, there was an awareness that they were not drinking enough and should try to drink more. Partners often had to remind them to drink. Strategies like marked water bottles and alarms were tried but for many these were only partially effective.
4. Loss, grief and the social side of eating
Eating is about much more than nutrition. Across our interviews we found that it was tied up with identity, pleasure, family, and social life. When Parkinson’s starts to affect it, the emotional impact could be significant.
Several people, particularly women who had always loved cooking for their families, spoke of a real sense of grief at no longer being able to fulfil that role. There was also frustration and guilt at feeling like a burden on their partners.
Eating out became more complicated, involving much planning to check menu’s, seating arrangements, and toilet access prior to selecting a restaurant. People worried about stigma, feeling embarrassed about spilling food, eating slowly, or having a tremor in public. Some had reduced how often they ate out, replacing restaurant trips with meals at home. For some, this meant few or no opportunities to eat out with friends. This was a big change from their past when they had been very social and eating out with others was the norm. Some felt more relaxed eating with others who also had Parkinson’s, where these challenges were understood and normalised.
For those earlier in their diagnosis, there was anticipatory grief, a sadness not just about what had already changed, but about what they expected to lose in the future.
5. The hidden work of being a care partner
Many care partners had taken over the responsibility for physical tasks such as shopping and cooking. This was often a practical solution. Care partners also played a role in monitoring their partner’s food and fluid intake. This varied depending on the current abilities of the person that they cared for. However, it was evident that those living with Parkinson’s disease and their care partners were keen to promote independence as much as they can, tying to take a shared approach to food related activities.
On top of this was the emotional work: the worry, the guilt when their partner lost interest in eating, and the sadness of watching someone they love change. One care partner described how his wife’s loss of interest in food had started to affect his own appetite too. The emotional weight of food-related caregiving is often invisible, but it is real and significant.
6. Left without guidance
When we asked about professional advice on nutrition, most people said they had received very little or none at all. Any advice received tended to focus only on medication timing, rather than broader questions about healthy eating and living well with Parkinson’s.
Many people had turned to books, websites and charities to find information themselves, though they were not always sure how reliable these sources were. Some felt they did not need further support. But many others wanted evidence-based guidance and felt let down by the current lack of nutritional support available. Several people mentioned being concerned about what they felt was conflicting advice about eating well. For many there was a perceived need for evidence-based information, but participants varied in how they want this delivered to them and when they wanted to receive it. For some, receiving written information was considered adequate. For others, a more individualised in-person dietary support was welcomed.
Why does this matter?
These findings show that the impact of Parkinson’s on eating and drinking goes far beyond simple physical difficulties. It touches on identity, relationships, social life, and emotional wellbeing, for both the person living with Parkinson’s and those who support or care for them.
There is a clear and unmet need for nutritional support and guidance for people living with Parkinson’s and their families. Better access to dietetic services and practical, evidence-based advice could make a real difference to people’s quality of life.
Acknowledgements
We would like to thank our funder, NHS Grampian charities [LOG937] who provided the financial support for this study. We would also like to thank Parkinson’s UK and the North of Scotland Parkinson’s Research Interest Group for their support of our study including assisting with the recruitment of participants and in helping us share our findings with their members. We finally thank our patient and public involvement volunteer, Mr. Tim King, who provided valuable input to the design, conduct and interpretation of our study and its results. We finally thank all of our participants for providing us their time and sharing their experiences with us.
REC name
London - Harrow Research Ethics Committee
REC reference
25/PR/1224
Date of REC Opinion
30 Sep 2025
REC opinion
Further Information Favourable Opinion